Friday, May 27, 2016

Six Days in Isolation

Whilst in college, for a brief period I was in a car pool of two. The other guy was a fellow named Dale and he got us involved in volunteering at Gordon Neighbourhood House where we were charged with team-tagging the two-times-a-week sessions that Wayne (not his real name) required as part of his therapy.

Wayne suffered abuse from his parents and had been removed from his family. He was a wreck. He would not talk and it was explained to us how, basically, everything everywhere had become a trigger for Wayne. I feel that Wayne, today, would be diagnosed with C-PTSD too, as I have been.

I could not have a kinder, more generous and compassionate friend than my friend, Bruce. Yet talking to him yesterday, perhaps for too long, led to a seizure. Going to the store for food, led to two. I can therefore believe that had I not talked to anyone or gone out, I might only have had one seizure yesterday. Still, having only four and going out — all without taking my medications (that I do not want to take) — is an accomplishment.

I go back to Dr. Shoja next Wednesday. For the week between my last appointment and the next one, I have decided to decline some phone calls and keep others short, stay home and see no one. This is my decision; it's a defensive strategy that comes from my seizure experiences to date.

During a seizure, I cannot stand up. I lose control of all my muscles and not only that, I also have convulsive movements. I cannot open my eyes, can't speak and I can do damage to my surroundings and myself due to the muscle spasms. Bruce says they last about five minutes.

Epileptics go into what is called a postictal state (PS) after their seizures. Often, so do I. In PS, you can barely speak, have great difficulty walking and one is severely cognitively compromised. Your eyes can open but they have a mind of their own. Some of my seizures are mild,. However, the more I have in a day, the worse they get. Tuesday and Wednesday of this week I spent most of my time either seizing or in PS.

So you can understand why I am in retreat. This is my plan, worked out with Dr. Shoja. If it works, it will result in me enjoying a far better quality of life than I've had for the past two weeks. And I will be able to take pride in being the architect of that improvement (with a heartfelt assist from Dr. Shoja).

When I was a kid I was quarantined. I can't remember why. I remember feeling like a prisoner as I do now. But the home I have now is a far nicer cell than were the rooms in which I was confined as a kid.

It's ironic that the kid that so wanted to belong is now a senior in a medically necessitated retreat from human contact. It's sad, too. However: I am determined to "win" this fight and a retreat is preferable to taking medications — at least for a week. On Wednesday, Dr. Shoja and I will decide how to proceed during the ensuing week.